Update on Luna~

[estragon]

A wonderful lady. Praying hard.

 

[nomoretears00]

Updates

~This was posted June 30th, and I missed it, dammit. Haven't been on FB much this week. I do think y'all will find this interesting:


ive been to hell and back and theres truly no place like home - i cant talk about the cruelty and discrimination ive gone up against and have been through at the hands of "medicine" these past several months, it hurts too much, lets just say that when i get the true diagnosis (which i know from the depths of my soul has to do with the lyme and co-infections) my lawyer will be contacted - i am home now where i belong - next week ill figure out how im going to get therapy again and what the next step is - finding a lyme literate infectious disease specialist top on the list - theres a reason for all of it, i know there is - im going to recover and thats all that matters - and i feel the love and support from all of you ♥


~and 12 hours ago:


hopefully tomorrow things will get done - the right tests will be done (completely, not half-assed), the right doctors consulted, and finally a diagnosis - i cant handle this much longer - i cant believe how atrociously ive been treated by three hospitals (including 2 academic hospitals) - helllloooo i had lyme disease twice when i was little - never treated via IV - have been sick ever since (except during pregnancy) and fit every single neurolyme criteria - wtf will no one listen!!? lyme is one of the biggest medical coverups in the US and do you know why? because the tests are expensive, the treatment is expensive, and insurance companies don't want to deal with it....well f@$*


~She brought the subject of Lyme disease up when this all started months ago.

 

[estragon]

Praying hard. Luna is a National Treasure.

If you are sick, a hospital is one of the most dangerous places you can be.

 

[RedHairedandFriendly]

I send all my prayers and thoughts to her and her family.

 

[litfan10]

Healing and soothing thoughts and wishes constantly being sent your way, sweetie! Best to you and the wee one. May you be on the road to recovery and as for professional medicine - go get 'em girl!

love you, Luna! Peace to you and yours!

 

[nomoretears00]

No good news, I'm afraid. This was posted 2 hours ago:


more confused than ever - waiting on referral to one hospital - get call today from comprehensive rehab that my neuro overturned ins denial and im approved for a few weeks of intensive rehab...but had given up on him because of the awful ER incident...his asssistant confirmed that ER lied and never contacted dr...so im going at it that if he will do the tests and listen to whole history and satisfy me with his ruling outs or diangosis - then i am rehab-bound, but if he is placating me just to get stronger physically and no intention following through..then no-go and will pursue 4th hospital oh and btw as of yesterday i now have facial paralysis (which i just learned tonight is a late stage lyme symptom - bells palsy) - i have to belieev this is all happening as its meant and that ill get an answer and help soon thank you for the updates, the love, and friendship --- and yes one day when i can write again i will probably write a book of my story so that others might be helped or find hope

 

[PennLady]

Poor Luna. Somewhere there must be a doctor who would listen to her; I think too many doctors think patients panic or something. This is nuts. Sending lots of positive thoughts, though.

 

[TE999]

Reading poor Luna's horrific odyssey through the world of Medicine reinforces my opinion that most doctors are lousy diagnosticians and prefer setting a broken bone or pushing pills than getting to the root cause of an illness; and don't get me started on 'specialists'.

God speed and healing vibes to you, dear Luna. I hope you find decent medical care and some genuine relief very soon.

 

[RedHairedandFriendly]

You have good docs and bad docs. I had my worse experience with my OB-GYN several years ago, when I asked for an antibiotic after surgery and she denied me. Even though my history showed I had always suffered infections at the incision site from prior surgeries that needed the wound reopened and sometime packed for weeks before they healed.

Less than 24 hours after being released, I was back in the hospital with a 104 temp and an infection that would not be treated with anything besides antibiotic for 4 days. This led to 48 hours before the infection reached and destroyed my internal organs - 3 surgeries later, and disfigurement of my abdomen as well as severe scarring, I'm here, but I am fearful of ever having a pap exam, or ultrasound on my remaining ovary because I am scared of what they will find and fear another surgery, even though I won't use my OB-GYN from last time. She'd been my doctor for 7 years, too.

Luna and her family are in my thoughts and prayers. Lyme disease is a challenging disease and one that when she does overcome this will spur her to action.

Write your book Luna. Love you!!!!

 

[nomoretears00]

Luna posted not long ago:

rehab-bound tomorrow - will decide my near future - they WILL listen to me - they WILL properly diagnose me - I WILL persevere and overcome - and if they dont want to do further testing...i will not be staying at the rehab hospital but try and wait patiently for the referral to other hospital

because of this facial palsy my eyesite is increasingly worse - i am now seeing shadows and half people's faces are distorted - an hour tonight after a rather severe seizure episode, i was unable to see people's faces - i freaked out - causes of these types of symptoms: seizures, severe eye pain/head pain, visual disturbances, paralysis of face, etc are usually brain cysts, tumors, result of infectious disease, and *ding ding ding* lyme disease - got good advice from therapist/healer about these doctors constantly asking/accusing me why im so calm "just tell them that getting upset makes it worse and that you practice meditation" that might work better than saying "ive been sick most of my life and this is just another thing i have to overcome" - well see

 

[nomoretears00]

Update on Luna

My day today: PT am- strengthening, balance sitting on bed and catch/throw ball - PT pm -stood with parlel bars 3 x for 30 sec. each got high 5s from therapists - - used bike to get my legs moving - OT - learned how to get onto floor from chair, retrieve toys, play a puzzle to prepare for wee pixie visit, and get back up into chair (OW shoulders!)...also practiced trimming my nails and stood 15 sec pulling myself up on railing - speech - hummed 'happy birthday' to prepare for her bday - practiced sounds (missed that fun ipad app) said her name!!! neuropsych -discussed strategies to get through weakness and pain to walk, game plan for home, and need for further testing/full neuro workup to be done before discharge ...whew buuuuusy day! Thank the universe that my schedule breaks after lunch and i snuck a nap in before PT. Weekends shortened therapy schedule but still will be working. Can't wait to see my wee girl this weekend!

 

[PennLady]

Good to hear she seems in good spirits. I hope she's finally getting the help and treatment she needs.

 

[estragon]

Nomore, many thanks.

Luna, thoughts and love and prayers and more prayers.

 

[slave_]

Thank you nomoretears! I appreciate this so very much!

Luna must never forget how many people care about her, have her in their prayers and meditations and look forward to your reports.

Including me

A bit impossible, but I send her a soft kiss on her cheek.

 

[PennLady]

I found these updates from Aurora Rose Andromeda on Facebook. She's a friend of Luna's. This is the order they showed up on my page.

Prayers are needed right now for Luna. She has taken a turn for the worse. I don't know all the details but her mom said it looks bad. Luna is in and out of consciousness. She cant see very well after having a massive headache. They did Ct and waiting on results. There was no bleeding. When she is awake shes confused. Luna needs prayers bigtime. Because it def doesn't look good. Pray that she returns to her daughter soon and fights this. Her daughter will be 4 next month. Could someone post this in groups too? I can not copy or paste from my kindle. Thanks everyone.
11 hours ago

talked to Luna mom this morning. She awake and aware of things around her. Her mom suspects that Luna had a stroke. Her one side is very weak. Doctors are not saying much and Luna mom is hitting wall after wall with them. Luna is doing therapies and eatting with help. She has little vision in her one eye and her side is very weak. Please keep prayers coming. Luna isn't out of the woods yet. Please let people know since I cant copy or paste. Thanks.
4 hours ago

 

[TxRad]

Prays on their way.

Much love also.

 

[LettersFromTatyana]

Thanks for the update, PL, though I keep hoping for better news.

 

[RedHairedandFriendly]

 

[PennLady]

Thanks for the update, PL, though I keep hoping for better news.

Me, too. I keep kinda hoping I made a mistake (as I did a while ago) but I don't think so this time.

 

[nomoretears00]

Thanks Penn, I missed that post.

I swear, it seems like things go kinda good, then she takes several steps back. But this one is a huge step back.

 

[TE999]

Thanks for the updates, Penn.

Now the poor woman's had a stroke? What fresh hell is this? She can't seem to catch a break.

Hang in and be strong, Luna. I'm sending mucho healing vibes and get well soon wishes your way.

 

[estragon]

Prayers, lots of them.

 

[PennLady]

This was posted about an hour ago by Aurora Rose:

Luna is doing better from what her mom told me. Shes able to text on he phone. Things are looking a bit better.

 

[PennLady]

Another update:

Just wanted everyone to know that Luna is doing really well. Very alert and doing things in therapy moving around some and more. Thanks for all the prayers.

 

[PennLady]

Another update from Aurora Rose, posted last night:

I talked to Luna herself tonight. Shes doing really good with some setbacks with her vision but more so struggling with doctors that wont listen to her. So shes still fighting them. Luna tires fast but has her chocolate appetite and spunky temper that I know so well. Keep her in your thoughts because they are working.